From PRWeb The FSHD Society announced today that it has signed a memorandum of understanding to enter into a three-year agreement to enable the expansion of the international facioscapulohumeral muscular dystrophy (FSHD) Clinical Trial Research Network (CTRN). FSHD is a hereditary muscle-damaging condition that affects an estimated one out of 8,000 people, or nearly one million men, women,… Read More »
FSHD Society signs agreement to expand CTRN
What’s in a name?
We’re now the FSHD Society Discerning readers will notice that we have changed our name and logo to align with how the rest of the world abbreviates facioscapulohumeral muscular dystrophy. This is not simply an exercise in trendiness. When we were the FSH Society, we led the charge for using “FSHD,” providing a single, consistent… Read More »
Radio show: Meet Heather Green, forensic psychologist
Join radio host Tim Hollenback via Facebook Live on Thursday, August 29, at 9:00 PM EST for a conversation with the fascinating Heather Green. You can read her story here. A former singer, model, and interior designer, Heather embarked on a new career when her diagnosis with FSHD forced her to reassess her future. Childhood… Read More »
USA Today features Carden Wyckoff
Those of us who spend (too much) time on Facebook may recall the envy-inducing photos posted last summer by Carden Wyckoff as she traveled solo with her wheelchair across Europe. Her story caught the attention of a reporter, and is now featured on USA Today! “Wyckoff hopes her trip will encourage more people with disabilities… Read More »
Our next radio guest is Alan Brown of NFL Films
We’re excited to welcome Alan Brown of Holicong, Pennsylvania, as our guest on FSH Society Radio on July 31 at 9PM EST. Alan is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL). Alan has FSHD in… Read More »